A 21-year-old man is suing the B.C. government for its delay in providing an expensive drug that he claims could have saved him from permanent disability.

Paul Chung of Langley, B.C., says the ministry of health provided him with Soliris, in 2017, only after an intense public lobbying campaign which led the province to cover the $ 750,000-a-year drug in specific cases.

The university student says he didn’t get the drug when he needed it most — immediately after his diagnosis with atypical hemolytic uremic syndrome (aHUS) the previous summer.

Chung says his charter rights to “life, liberty and security of the person” have been violated by an “arbitrary” decision that left him on permanent kidney dialysis, unable to attend work or school.

“This decision was too little, too late… as Soliris must be administered promptly after diagnosis to be effective,” Chung’s notice of civil claim reads.

According to Chung’s lawsuit, he was admitted to Langley Memorial Hospital with acute renal failure in early August 2017.

AHUS is a rare condition that affects only one in a million people and fewer than 150 Canadians. The disease causes too many blood clots to form in the blood vessels, blocking regular blood flow to the kidneys.

Chung was rushed to hospital in 2017 after completing his first year of university. He was diagnosed with a rare disease that causes kidney failure. (Paul Chung/gofundme)

Chung says he was taken to St. Paul’s Hospital in Vancouver, where staff asked if he had private health insurance that might cover Soliris. He didn’t, and couldn’t afford Soliris on his own.

“[Chung] was advised a disagreement existed between the medical community and [the province] over the issue of extending coverage for aHUS treatment,” the notice of claim reads.

“Paul’s mother has been worried sick and continues to lose sleep. Paul’s father has [taken] time off work to care for Paul. Paul’s brother dropped his university courses in order to support Paul,” his GoFundMe page reads.

“Please pray for Paul.”

‘The kidney had already scarred’

According to Chung’s civil claim, a Canadian drug expert committee concluded that patients like Chung could benefit from Soliris in May 2015 and other provinces approved coverage of the drug while B.C. did not.

He said the province made the decision after reviewing policies in Saskatchewan, Alberta, Manitoba and Ontario, where coverage is provided in exceptional cases.

Chung claims he was approved for three months’ worth of Soliris on Dec. 6, 2017.

B.C. Health Minister Adrian Dix announced coverage for Soliris on a case-by-case basis in November 2017. (CBC)

But he says he was also told he would need to improve to the point of not needing dialysis to justify further coverage.

His coverage was discontinued in February 2018 “due to lack of improvement and [he] remains permanently on kidney dialysis.”

“His blood results have become stable, and Paul is no longer in a life-threatening position, but the miracle feature of the drug, the recovery of the kidney did not work as the kidney had already scarred,” his GoFundMe page reads.

Chung is suing for damages including cost of care and loss of income.

‘Arbitrary, irrational and unreasonable’

Chung also wants a declaration that the province infringed rights guaranteed to him by the Charter of Rights and Freedoms.

“[Chung] is now on permanent kidney dialysis and his life expectancy is compromised,” the notice of civil claim reads.

Chung claims that the government provides “expensive treatment and drugs to many residents of British Columbia in a myriad of circumstances.”

He says that the decision not to give him the drug “violated basic standards of decency” and “was arbitrary, irrational and unreasonable as it will cost more to treat [Chung] on permanent dialysis than to have administered Soliris to him.”

According to Chung’s gofundme page, it may take six to seven years for him to get a kidney transplant — but he will still need Soliris to protect the new kidney “from getting affected by the disease.”